Hi all -
First time poster - been lurking since I found you guys in February 2011. I sooooo appreciate everyone sharing their experiences with TBI. I've been gleaning what information I could off the boards for my husband (51) who had a skiing accident (impact with ground only or he'd be dead for sure) 1/30/11. You have all been so helpful and informative! Thank You!

So, here's our story...

John is 51 y.o. machinist (factory CNC/NC equipment) sustained TBI 1/30/11.
MRI / CT scans show no damage.
Been off work since 1/30/11 - hope he's back to work by 1/2012.
Has full gamut of symptoms:
Dizziness
Eye spasm of left eye
Left eye doesn't track properly some of the time
Brain fog
Extreme fatigue
Confusion
Mental fatigue
Headaches
Brain "flips"
Balance
Light sensitivity
Extreme noise sensitivity
Probably some more, but ENOUGH already!

1st month was TERRIBLE. Stayed in dark bedroom watching tv (thank goodness he could tolerate tv). Felt horrible all the time. Slept 3 weeks.

2nd month - not a whole lot better.

He is making some progress now (almost 6 months post concussion). Still a loooonnggg way from where we need to be. He was NOT open to the ideas I'd get off the boards for many months. Kept thinking he could "push" through and time would help. He is a very strong man and very, very hard worker (usually works 60 hours at factory then comes straight home and works for a couple hours around house, etc). Never misses days of work, etc.


I am a HUGE believer in being a Patient Advocate! Most people dealing with a health crisis feel their doctors will help them get better. In reality, there are outstanding dr's out there --- but not a ton in my experience. YOU know yourself or your loved one best and YOU can be a powerful force in helping on the road to recovery and reclaiming life.


Things that have helped us are ideas/tips from the boards such as:
A link I came across to the TBI guide. THANK YOU THANK YOU THANK YOU! I'm a new poster so I can't put the link in - maybe someone can for me? It's The TBI Guide one. Thanks!


Avoid any and all impact which can jar the brain slightly. This was HUGE for us. John's dr's were telling him after 4-6 weeks to begin walking and light exercise, etc. We went for a 1/2 mile stroll with him weaving slightly. Next 2 days (on his own) he walked a mile a little faster. Bed for the next 5 days. Repeated this cycle a couple of times. Month 4 he had a couple of "decent" days and was trying to do some outside chores. Picked up a sledgehammer and knocked a post with it - 2 weeks in bed.

Now, he avoids ANYTHING sending vibrations to head. Walks carefully and lightly, goes slowly downstairs, doesn't pick up even a regular hammer, etc. As soon as he gets careless, down the slippery slope he goes.

Avoids noises - lights - stimulation
Has learned to send the kids into the grocery store to get the milk and stuff. Pick and chooses the situations to be in and tries to control them as best as he can (wears ear plugs in church or anywhere else there is a lot of chattering or loud music, etc)

Sertraline (Zoloft) seems to possibly be helping his "brain fog". On 12 mg for about a week. Hasn't had a brain fog since day 2 or 3. Also hasn't had his normal day-long headache during this period. Will keep you posted. Month 5 began getting anxiety attacks and this seems to be helping with those too. This is the 2nd med. he has tried - 3rd dose.

Prism on eyeglass lens Just got this on 2 days ago (after me badgering him to go to eye dr. for 3 months ). He says he can tell a difference with the prism - things look more "even" to him, eye is not spasming so far. Hoping this may help with some headache issues and balance too. Will keep you posted, but he may be one of the few that benefit from the prisms.

Sleep machine Ok- I'm jumping the gun on saying this is gonna help him. He goes next week for the 2nd sleep study where they fit you for the oxygen machine and adjust it for your needs. He has SEVERE sleep apnea and gets very little oxygen while sleeping. His dr's are AMAZED he doesn't fall asleep while driving, etc. Said he is one of the more severe cases they deal with. I am confident this will help him feel better and more energy too.

Dr's are holding off on cognitive testing - want to wait 6 weeks after the sleep machine thingy so John is rested and as brain energized as he is going to get.

I realize that some of the things we're trying are probably not going to be a "CURE" in and of itself. What I'm encouraging him to do is try to "nip" away at the problems and if we can control or cure symptoms 20% of the headaches, 20% of the fatigue, etc then we are making progress. I believe healing is in the hands of the Lord, but we have a responsibility to do what we can to help that along.

Next he will be trying:
Video games 10-20 min. a day to help with the eye tracking issues
Playing his guitar 10-15 min a day to help with concentration/thinking
After that we'll check out the website I've seen posted to help with the memory and cognitive skills.

I hope someone newer can maybe get some hope, ideas and encouragement from this posting. I truly appreciate everyone's taking time to post your experiences as I have found them very, very helpful in this journey we never wanted to be on!

Blessings, peace, grace and wisdom to you all...
Amy

Standing on the promises of God!

Amy,

I am curious about his sleep apnea diagnosis. It is Obstructive Sleep Apnea or Central Sleep Apnea?

The study may not have specified but you should be able to tell by watching him sleep.

Does he snore and seem to get less breath as his snoring gets worse but his chest is still trying to pull breaths?

Or does he quietly slow down with his breathing and his chest finally stops pulling breaths? (Then, he would eventually snort or huff back to heavy breathing.)

If he gets fitted for a CPAP or BiPAP, it will be very interesting to see how it works for him.

I have Central Sleep Apnea and have been looking for solutions. The CPAP and BiPAP will not help me.

My wife has observed me stopping breathing as many as 12 to 16 times in an hour. She now needs to go to bed before me because otherwise she gets stuck listening to me breath. If she wakes up to my breathing or lack thereof, she wakes me to tell me to go sleep in my recliner where I have very little apnea problems. I must sleep on my back with my neck in a straight position to reduce the likelihood of my apnea.

My best to you both.

Hi Amy,
Thank you for posting your experiences and what you have learned so far.
You make want to post some of the things that you have learned in this thread:
http://neurotalk.psychcentral.com/thread140214.html
and/or in the first "sticky" at the start of this forum. (You could always cut and paste parts of your first post.)
Thanks for sharing.
Concussed Scientist

Hubby has OSA I believe. He is going to use the CPAP thingy and see if that helps. If not, he will need surgery - UGH.

Help for CSA sounds more challenging - sorry to hear it's an issue for you. From your posts I've read, it seems you have enough other challenges!

I did see something on the California Sleep Institute (Palo Alto I think) about the Upper Airway Stimulator (UAS: treatment that leverages neurostimulation (the stimulation of the nervous system through tiny electric pulses) to permanently address sleep apnea without machines or surgery) they implant for people like you with CSA or OSA - google Palo Alto Patch sleep apnea and see what comes up. Have you checked into that yet? I think this is very new technology - the CA Institute is just conducting trials on. Not sure if there are any other trials going on or what - but something to keep an eye on.

Mark, thanks for allllll your posts, encouragement to everyone and sanity saving tips. You are very much appreciated.

May the Lord bless you and guide you -
Amy